Monday, December 5, 2011

The Weird Stuff They Forgot to Mention (plus updates)

So I’ve already told you guys about some of the joyous side effects of my medications (i.e. extra chin, hairy man-legs).Those are fairly typical side effects with Cyclosporine and steroids, but there are also some things that are not as typical that I get to enjoy as well.I’ve been gathering this little list in my head for a while so I thought I would share them with you peeps:

1.)Hand tremors.You should see me try to put on mascara or paint my nails.Eating soup is also ridiculous.It’s like I’m 80 years old.

3.)Burning hands.This one is weird.When I’m cold my hands hurt like they’re burning.The best way that I can describe it is like the feeling that you get when you come inside after playing outside in the snow for a while.You know how your hands are so cold but the house is warm and your hands kind of burn but it’s hard to tell if they are really hot or really cold?It’s like that.I also can’t tell when things are hot and cold by touching them with my hands.When I reheat something in the microwave, I touch them with my finger and it will feel like it’s really hot.Then I take a bite and it’s lukewarm or cold.It’s so strange.So I’m not the best person to ask to reheat something for you, unless you don’t mind me taking a bite of it to see if it’s warm.

4.)Space Cadet status.Cyclosporine makes you feel like you’re in a fog, everyday.It’s probably the most frustrating side effect.And surprisingly, it is the most evident to me in social situations.When I’m in a group of people and trying to follow the conversation, it’s a struggle to stay focused on what everyone is saying.So if we’re having a conversation and my eyes glaze over or start to wander, it’s not because I don’t care what you’re saying.It’s just that it’s hard to concentrate.

5.)Scaley Palms.Bear says it looks like I’m turning into an amphibian.When I get out of the shower, my hands look pruney (normal), but the palms of my hands are hard and peeling (not normal).It’s worse on my left hand.I have no idea what it’s all about, but maybe Bear’s right?I’m turning into an amphibian :).

6.)Oily skin.Yay acne! I missed you and was really hoping you’d come back for a visit in my mid-twenties.

7.)Flushing skin.Sometimes I’ll be in the middle of telling a story and all of a sudden I turn pink from my chest to my forehead.But I’m not embarrassed.Just hot and pink.It happens after laughing or crying also.It’s weird.

8.)Long, long hair and long, long eyelashes.Yes! There is such a thing as a good side effect! The silver lining :)

As a result of the above weirdness, I’ve picked up some habits to adjust to the side effects.Since I’m a space cadet and have a hard time focusing, when I’m in a group of people I tend to choose one or 2 people to talk to and ignore the rest.Not trying to be rude, but I just can’t keep track of so many people’s convos.

When I’m watching a TV program that has a complicated plot, sometimes my brain just completely ignores certain subplots of the show.For example, if there’s a crime show that has a love story in it, I’ll only follow the love story.I couldn’t tell you who killed who, but I know who hooked up.It’s not a conscious decision, it just happens.

Shortly after entering a store or house, I know all the places that I can sit down.I’m constantly surveying for places to put my butt if/when my legs start to hurt.This is especially true in large stores, like Meijer, Costco, Sam’s Club, any home improvement store, and any store with “Super” in front of it.(Seriously Lowe’s is like my worst nightmare.Why is it SO big??)Summer was good because most stores like these have outdoor lawn furniture on display.Perfect.Oh, I’m just trying out this lovely bench swing you have here…no biggie.Nobody even looks twice at you.Now that it’s colder it gets tricky.I’ve had to improvise.I went to Costco with my mom and sister a while ago and needed to sit down.I looked for the any piece of furniture on display to sit on…nothing.I looked by the concessions…all tables were full.So we wandered down the soup aisle and at the end I found a stack of sacks of rice.Not too low, not too tall…slightly embarrassing to sit on?Yes.Does it matter when you’re that tired?Not at all.Sometimes you’ve just gotta do what you’ve gotta do.So I sat on those sacks of rice.And it was glorious.

I went to the doctor last Thursday and my counts were:

Platelets: 59,000 Hb: 10.2WBC: 2.2

Platelets are sloowwwwly climbing and my hemoglobin is the highest it’s been.Yay!My white blood cells were down a bit, probably because I had a fever on Monday.

Thanksgiving was lovely and delicious.My sister and I completed the Ann Arbor Turkey Trot for the 4th year in a row, although we had to walk it this year since somebody went and got a disease…geeeez what a downer.;)

I also enrolled for classes next semester (waaahhhooooooooooooo!!!).Really no one should ever be that excited to take grad school classes, but I think you can imagine why I am pretty pumped.

Thanks for reading this random update, and I hope you’re enjoying the holidays!

3 comments:

oh my space cadet friend, its so good to read your blog. And i can totally see how a sack of rice could be comfortable in your state, no shame. "I have a disease!" As far as the amphibian transformation goes, my mom had a similar problem and I already called her to find out about this great lotion/balm she used. Going to see if I can find it for you (xmas gift spoiler alert).

count chart and graphs are updated and will be emailed to you shortly : )

YAY YAY YAY to classes! I apologize in advance to distracting you next semester, although I was just informed I may be working more hours.

I am so happy that you are back to Pittsburghy next semester. Not because you will be further away, but because you will be where you belong. And I will be able to sleep better at night. :] love you sister.

About Me

My name is Kelsey, and I am a 25 year old graduate student currently living in Pittsburgh. I was diagnosed with aplastic anemia in 2008, and successfully treated with ATG therapy before relapsing in the summer of 2011. I've made this blog to be a resource for others with aplastic anemia, to keep friends and family updated, and as an outlet for reflection on the journey for me. I will try to be as honest as possible about the experience of aplastic anemia, mostly for those who are also going through it, but forgive me if I have days where it's not my topic of choice. Thanks for stopping by, hope you enjoy :)